Norway: “The upcoming legislation will be a disappointment”

In Norway, JAG Assistanse has four users to date, but after gaining approval as a BPA provider (Brukerstyrt Personlig Assistanse or user-controlled personal assistance) from 15 municipalities, operations manager Sidsel Maxwell Grasli expects strong growth. At the same time, she fears that JAG’s target group will be let down by the upcoming Norwegian legislation for user-controlled personal assistance.

Expects strong growth

Using the Swedish user cooperative JAG as a model, JAG Assistanse started up in Norway in March 2011. It is intended for people with multiple disabilities, one of which must be a cognitive/intellectual disability. “Currently we have four user-controlled personal assistance agreements with individual users, ten new ones are on the way in and 40 individuals have been referred to us. We are an approved user-controlled personal assistance provider in 16 municipalities, including 14 municipalities in Vestregionen.”

How large do you believe you can become? “As knowledge spreads that personal assistance is a great tool for people with cognitive disabilities, I think the pressure will increase. About 20,000 people have cognitive/intellectual disabilities and one third of them could be relevant for our service if they could get user-controlled personal assistance.”

Sidsel Maxwell Grasli has a daughter with a cognitive disability who received personal assistance. She has previously worked at the assistance cooperative ULOBA, but feels that people with cognitive disabilities do not really fit in there. “ULOBA has brought Independent Living and user-controlled personal assistance to Norway, it’s done a great job. But they’ve also focused on people who are capable of acting as supervisors and have not really adapted user-controlled personal assistance to our target group.”

It sounds a bit like STIL and JAG in Sweden? “Yes, that’s a good comparison. They see different needs and solutions for different groups of people with disabilities in an equal perspective.”

Difficult for those who do not act as supervisors to get user-controlled personal assistance

In Sweden, people with intellectual disabilities are a key target group according to the classification system in the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS). Norway has a municipal law, the Social Services Act, that provides the opportunity, but not the right to support received as user-controlled personal assistance. “Initially, user-controlled personal assistance was aimed at people who could supervise their own assistants and in 2006 people who are unable to supervise their assistants were also included. Nevertheless, it is still much harder for them to get user-controlled personal assistance and often requires perseverance with several rounds of applications and appeals.”

Fears watered-down legislation

Norway is in the middle of a legal process to introduce user-controlled personal assistance legislation under which municipalities will not have the choice of opting out of introducing user-controlled personal assistance. Last summer the Storting (Parliament) said that a stronger right to user-controlled personal assistance should be explored, “within the current economic context, and for those with the greatest need for assistance." Three weeks ago the Directorate of Health (equivalent of the Swedish National Board of Health and Welfare), which was tasked with investigating this situation for the Ministry of Health and Care Services (Helse – og omsorgsdeper-tementet, HOD), released a report on which JAG and others had the opportunity to comment. “The Directorate of Health recommends that user-controlled personal assistance should not be provided if assistance is needed at night, that users cannot have assistants accompany them when they travel, and that substitute assistants cannot be used. People with cognitive/intellectual disabilities may also be excluded. All indications are that they do not understand the core values ​​ and we fear a betrayal of user-controlled personal assistance.”

Other proposals under discussion to limit both costs and the number of users, include excluding people who currently receive fewer than 20 hours/week and people over the age of 67. “Many people who are completely dependent on this aid may only have sixteen hours/week and they would no longer receive this assistance as a right.” Unfortunately, limits will be imposed in an effort to keep costs down. Minister of Health Anne-Grete Hjelle Strøm-Erichsen has said that legislation would cost NOK 18 billion, but the Storting group has calculated one to two billion; I ask Sidsel Maxwell Grasli about this large discrepancy. “Unfortunately, Sweden is used as a strong argument for not making personal assistance a right; the message is: ‘Look at Sweden, it became too expensive and look at all the cheating.’ The problem is that the underlying economic calculations are extremely poorly defined and too narrow from a socioeconomic perspective.”

Municipal contracts

Municipalities can now decide who is allowed to employ the assistants. Procurement processes in which companies submit bids and win contracts to be the user-controlled personal assistance employer in the municipality have become increasingly common. JAG Assistanse has been approved as a user-controlled personal assistance provider in 14 municipalities in Vestregionen, one municipality outside Oslo and an application was just submitted to Oslo municipality. “We haven’t experienced any conflict with the core values of independent living in the agreements we’ve signed and filed, since the preparatory work for the law serves as a foundation. A conflict may arise in other municipalities if the municipality does not understand the core values of user-controlled personal assistance.”

ULOBA has criticized the contract process in Vestregionen and states that it is not compatible with independent living, since the user needs to apply for coverage for costs associated with unsocial working hours afterwards if assistance is provided in the evening and on weekends. However, Sidsel Maxwell Grasli can accept the contract process. “We can bill the municipalities for evening and weekend hours afterwards. ULOBA feels it’s a matter of control, but we think it’s reasonable.”

According to Sidsel Maxwell Grasli, ULOBA has also criticized the fact that the municipalities want individual management of how costs for assistants are handled. “We understand that the municipality wants to control the money to ensure that it’s only used for assistance.”

Private companies may cause user-controlled personal assistance to be watered down

Sidsel Maxwell Grasli sees both advantages and disadvantages in the entry of a growing number of private companies into the market. She is in favor of having more providers to offer diversity, where the individual can make the most appropriate choice. “On the other hand, we’ve seen that some of the companies that were approved know very little about user-controlled personal assistance and its core values. In the long term that may lead to a watering down and damage the structure of user-controlled personal assistance. If the new potential legislation is unclear, the risk is even greater that user-controlled personal assistance will be more like municipal in-home support services.”

Wants relatives to have the opportunity to work as assistants

In Norway, as interpreted from the Norwegian Public Administration Act, one family member may not work permanently for another family member, without the approval of the municipality. However, it is acceptable for a family member to work as an on-call assistant if necessary. According to Sidsel Maxwell Grasli this is a long tradition that applies in all care professions in Norway. “Relatives have occasionally been approved as permanently employed assistants, usually a son or daughter. We want to change this since we know that a family member can be extremely important for assistance to work in practice,” says Sidsel Maxwell Grasli.

Sidsel Maxwell Grasli was interviewed by Kenneth Westberg on December 29, 2011